Sunday, 6 October 2013

No longer living to eat

Hello Twitter chums. This is my first
ever Blog. I don’t expect there to be many but I will use them to share stuff
that’s simply too big to tweet. So we know that all people’s journeys with
condition are different and individual. Many who have Chemotherapy will tell
you of the side effects. These are many and varied and include wee the colour
of Iron Bru. I text my mate John, I said my wee’s the colour of Iron Bru; he
replied “does it taste like it!” Then there is the metal taste in the mouth
that spoils eating. I had that and more! During my second line Chemo treatment
everything tasted like sour (gone off) milk. Everything except milk, that just
tasted like milk! So you quickly needed a drink to wash food down, but all
drinks tasted like they’d been heavily dosed with salt! I was a fairly large
bloke who lived to eat but during treatment that all changed!

So if you eat a bad egg for some
considerable time after you are definitely off eggs. Following the same
principle when I came out of treatment (in August this year) I had that but
with everything. Oh dear I can hear you saying, yes oh dear in-deed! So
although I could now drink finding something to eat that my brain wasn’t adverse
to was a real challenge. Scrabbled egg topped with smoked Salmon worked because
I hadn’t had that before due to it not being overly common on menus in the Two
for £10 pubs that we commonly frequented!

But typical of my journey there is
more! My Tumour is in my stomach but specifically at the base of my Oesophagus.
So over time it has now grown into there making swallowing anything other than soft
food completely out of the question.

And still there is more (How sorry
for one person is it possible to feel I can hear you asking, well we shall
see!). I was a chocoholic. A proper one who would take said confectionary from his
own children on the basis that if they had truly wanted it they surely would already
have eaten it. Easter was a particularly profitable time for my two girls. They
would save and (most importantly hide) Easter Eggs knowing that Dad would in
time pay handsomely for them, the record (so I am often reminded) being 10 quid
for a Cadbury Buttons Egg when the girls were still in Primary School. My almost
spiritual love of chocolate has also gone. I can still eat it but now it just
tastes like food, what’s the fun in that. Surely the idea of chocolate is to
have one square then suddenly realize you need another 36 in order to be happy!
But at least now without chocolate in my life my suits have a better chance of
fitting!

So I share this because it’s very
difficult for the rest of the world to understand. People think they are
helping by giving you things to eat with the direction “this is lovely, you’ll
like it, it’s nice”. The really tricky one is when I've settled on something please don't offer me anything else because then I don't want anything! People mean well but have no idea. For me it’s like the Christmas
episode of the Vicar of Dibley, where (so as not to offend anyone) Geraldine
has three Christmas dinners. For me eating any food is at best like the start
of meal three I would say!

So where is the positive? Well the
brain is a wonderful thing and I often think mine works independently as it is
constantly full of surprises. Where before I lived to eat my brain simply now
says, " Eating, you don’t want to be doing that,” with the exception of
course of things that can pass through what remains of my Oesophagus. It is
difficult to explain, I can’t eat so I no longer particularly want to! I can
eat enough to stay well and a great tip is to add 4 spoons of Marvel powdered
milk to a pint of full fat milk which turns it into a food supplement without changing the taste! And it
gets better than that because on days when the Oesophagus is working OK my appetite
returns a little bit so I can eat more.

People talk to me a lot about the importance
of a positive mental attitude but I think being open minded is far more important, certainly when you are on a journey like ours. If I was set in my ways and
considered no day to be complete without a Full English plate full and the
option of a Mixed Grill later on I would be truly buggered and very unhappy!

Thanks steve xxx as a person that lives to eat I really need to start finding happiness in something other than a bacon butty, besides those pigs are so dam cute!! Keep blogging your a star and an inspiration!

Just brilliant steve ! Honest and funny. Sometimes we just have to try and laugh. Liver surgery this week so small break from chemo......now I,ve got more hair on my chin than on my head !!! How is that playing fair ha !

Inspiring. I remember how chemo affected my taste. Someone (who had been there before) offered a word of wisdom. Don't eat anything you really like, chemo will make sure you never do again. Keep up the tweets and the blog and very good luck on your journey. X

Hi steve, i enjoyed your blog. I will continur to read and of course follow you on twitter. The story you tell regarding the effects of chemo resonate those relayed to me by my wife. Her journey continues as i pray does yours.

Great blog and great idea Steve. For me, compared to many, my chemo was relatively straightforward. My pee was the colour of a rival brand of fizzy drink, Tizer, but it was the taste and digestion issues that got to me, from one end of my body to the other, if you know what I'm saying! I do sympathise about the chocolate though. Do you remember what those previously enjoyed foods tasted like, or are they now permanently tainted by the more recent experience?

Hi Steve A friend sent me a this link as he wanted me to do a similar thing as I am on a similar journey to you, which might take a little longer as I have Mesothelioma they think 95% caused by asbestos, which I have never knowingly worked with, so bitter pill to swallow.

I love your humour and I feel we are treating the bullet to the head in the same way, there is nothing we can do about it, so lets get on with life and hopefully give a little strength to people close to us who are suffering more than we are in some ways. You have put into words in a great way so many similar feeling and thoughts that I have, so refreshing to read.

I start the chemo next week, every 3 weeks for 3 times. The have given me pills injections etc, so the side effect might be not as bad as they could be. But reading your blog I can see what I could face, so forewarned is for-armed.

I felt guilty in hospital because I feel virtually normal, maybe a tad out of breath then a year ago, but I feel quite good and positive. I did tell a close friend yesterday that a wake when I am a live and kicking would be a great Idea. Why should I pick up the tab when I am not there to enjoy it. My goal is to put a smile on everyone's face and not have people afraid to talk to me about my illness.

Thank you so much for giving me a little more extra strength and for putting a grin on my face, my thoughts are with you and your family and friends.

I might be on the later flight to you, but it we ever meet up in that pub in the sky, reserve me a bar stool next to yours.